The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

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Tuesday, 21 February 2017

Where does healing begin in chronic illness and disability?

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It seems to be that my sole purpose in life has become that of dedicating all of my waking hours to healing myself. Physically, mentally, emotionally, you name it, behind the scenes I am working tiresomely on it everyday. Is it hard? Ridiculously, I feel as if I hit a brick wall every other day. Is it draining? Beyond belief. Have you wanted to quit? Yes, yes and yes. Is it worthwhile? Certainly, I know that my future self will thank me for it, one day.

In the current realm of science and specialists, I will never be cured. Don't get me wrong, I hope, pray and have the faith daily that at some point in my lifetime, there will come a change for this outcome, but currently, a cure does not exist for my illnesses, none of them. Now if that doesn't sound particularly hopeless to you, I don't know what does. The term "incurable" has become something of which I have now distanced myself from. I try my upmost to not think of its meaning, because it's meaning to me adds a downer to my day. It seems finalised and I don't particularly like that idea in terms of health.

Sometimes, the medical report can look incredibly overwhelming and isolating. It makes you feel frightened, scared, worried and so many more draining emotions. I have many moments like that, but I now try to ask myself, - What can I do to improve MY health today? When the medical report looks hopeless, I try to tell myself that faith, hope and hard work will get me through this. I have to do my part, the responsibility for my health does not solely lie on the shoulders of my doctors. It lies on my commitment to get myself somewhat better, too.

Looking after our health and wellness is a task in which we all signed up for at birth. We do not have unlimited chances to push this prospect aside. Our health is our wealth. Whilst we were not equally given the same pack of cards to deal with during our lifetimes, regardless, we all were given something to work with. We can have assistance provided to us through mentors such as doctors, specialists of their fields, counsellors, physiotherapists, psychotherapists, nutritionists but we also need to take some responsibility for our bodies too. They are perhaps faulty by genetics, but there are ways in which we can find avenues to help ourselves. I however, have grown into a becoming a firm believer in taking your own power back in the ways you feel it is necessary and possible.

On my personal journey, healing began the moment I understood that something really was not right in my life. Let me specify, this realisation took years. I felt that my life was over before it had even begun and I truly gave up trying. I accepted the cards I had been given because I felt they were that of a hopeless outcome. My life was empty, boring and consisted of spending every waking minute laying in my bed for weeks, months and years on end, only to repeat the cycle after a day outdoors every few months.

Chronic illness has this weird way of convincing you that this is the best things will ever get. It makes you feel doomed, unhappy, different and unworthy of the beauty that life has to offer us. It makes you feel as if you are dragging around a ball and chain, without any free time of your own. It convinces you that you won't ever get better. It is almost like that bully who puts you down about something before you've even had the courage to express yourself. I felt incredibly sick of being suppressed and caged by something that was invisible and unable to be felt by the touch of others, yet on my behalf it was something that was eating me up inside and could be felt so deeply and hurtfully.

I knew that things really had to change if I wanted to build any form of a life for myself. I will be honest with you all and tell you that the thing the spurred me on the most was understanding that my illnesses had caused me to be trapped in more ways than one. They had left me with their physical impairments, but they had also left me with a defeated heart, which seemed to have the greater effect on my lifestyle. When your heart and mind are defeated, they have no way of showing you the ways in which you can heal from the damage. Chronic illness had drained all hope and belief from my system and left me feeling like those feelings would never return. Spoiler Alert - Hope and belief have slowly begun to return and whilst my disability doesn't feel much different from this time last year, I have seen a huge shift in how I am mentally coping with a long term situation like chronic illness. I now feel that hope and faith gets me through my worst moments.

Healing doesn't simply start from the parts of the body which cause the most aggravation, nor being cured by chronic illnesses. It begins when your heart and mind decide that enough is enough, you deserve so much better than your present circumstances. It starts with the aim to fix the parts of your life that have been truly broken and out of service for so many years now. It starts with making time for the parts that really matter to you. For me, it has been physiotherapy and getting outdoors in my wheelchair more often. For you it could be relationships and wellness. Every part of my existence within the world had been out of action for so long that it became normal to be the predominantly housebound girl with a crushed spirit. It became the way in which I often identified myself, which was when I knew that enough was enough. I had to find a way to fight for a life and not just an existence. I strongly express that I never want to get into that situation or be that girl ever again, that is why I work tirelessly on building my individual form of recovery, wellness and healing.

What matters is making small steps in the present. I'm an all or nothing girl, I envision something and need it to happen and when it doesn't, well I wonder why I bothered focusing on the task in hand. It's part of my personality but I'm also a realist which helps me to counteract this problem. You can not just wish upon a star for things to fall into place in your life. Disney stories are beautiful, but they are not always reality (still waiting for my Prince Charming to come and sweep me off my feet, however.)

Healing, recovery, wellness, whatever you want to label it takes guts first and foremost. It takes a ridiculous amount of your own hard work and countless days where you are guaranteed to fall down and feel as if you can not bounce up again. Its going to take patience, commitment, charisma and pacing. It's going to take the most mundane and boring routine for a very long time. Things such as physiotherapy everyday, working on making your mind your strongest tool and working on making your outlook much more positive. Most importantly, it's going to take every ounce of energy, fire and heart that you have inside of you. Yet, if I can start this path, I am pretty certain that all of you can too. If you can dream of a better life, you can work hard to make it into a reality.

I try tremendously hard to the point of tears and frustration. I want to quit and hibernate for a month, yet then I remember where I was a year ago to now. My circumstances seem incredibly hard now, but they truly should be now that I am fighting for change each and every single day. Most importantly, fighting for the life of a young women who is absolutley worthy of living a great life whether she currently has chronic illness and a disability, or not.

Throughout most of my week, I wonder what I have got myself in for in terms of healing my life with chronic illness. Taking the steps towards recovering from the lasting effects of ten years worth of chronic illness seems impossible a lot of the time. It's like finding the first piece of a thousand piece puzzle. Where on earth should you begin? Well, you do some soul searching and figure out what your current priorities are. I think about my goals for the future and how I can get closer to them with the abilities and pain levels I have in my present. My present abilities change from hour to hour, even this prospect startles me. When these moments happen, I could become defeated and willingly walk backwards to the life I had, or I can keep plodding along the path that heads towards where I wish to be, typically taking a couple of steps forward and then one large step backwards. It is rather testing, but I know deep down this risilience inside is going to get me to where I want to be in life and serve its purpose in other ways.

My circumstances in the past had tendencies to feel bleak beyond belief, yet now I have engrained a routine into my mind and day and I try my upmost to stick to it. I still have my days and my moments where I have to admit defeat in my day to day schedule, usually through the most simple of ways or tasks. Yet, the key words I used above were DAYS and MOMENTS.

Everything is changeable.

My favourite quote is, this too shall pass. When I'm in an extremely bad way, I try repeat that mantra to myself to get me through whatever I am dealing with and let me tell you, it always passes.

2 comments:

You posted this about a year ago if I'm correct. It been approximately a year from then. How are things now?

I found this blog today while looking for forums or other platforms for young people who were dealing with chronic illnesses. As I myself am dealing with a chronic illness ... You know it's great to find people who go through the same things as you, who travel the same roads as you do. Reading your blog I've found some inspiration for the moment. And reading this blog has made me aware that there are possibly a lot of young people going through the same challenges as I am. Although when I look around me it doesn't seem that way. Thanks.. And Good luck on your journey... :)

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